The New Job

How's work? How is the new job? I've been happily inundated with those questions. I'll answer them now! 

I love my new job! I really do. I work at home and I manage their social media. I plan and update their social media accounts. It's really a wonderful job for me because my disability does not interfere with the tasks whatsoever. This is rare. Usually, I have to ask for accommodations or do things differently. With social media, you are not asked to write a significant amount but a frequent amount. I can easily think of hash tags for Twitter, easily think of smart Facebook statuses, this job was made for me!  I get to work at home which makes my life much easier. I was thinking about it and I probably would have spent the first week at River North installing my keyboard and word prediction software. Instead, I immediately started actually working. It should be that way.

My boss is named Sharon. She is the nicest woman and boss. Sharon has already let me write an article for our website. That article should be posted next week. We are experiencing some technical difficulties but those come with a new job. I do have my first meeting in the city two weeks from now. I am so excited to meet my coworkers and understand how we all fit in the organization.  

I did get my first paycheck which was awesome. I opened it during my birthday party. Julie was at my birthday party and helped me open it which was a great moment. It made the night! Speaking of my birthday, thank you for all the birthday wishes and love sent my way. I felt incredibly blessed. 

Julie? She is doing well. She was SCREAMING at the Blackhawks, it was hilarious! I'm thinking, "How can you only have one decent lung and scream THAT loud"? Julie can! I've seen her twice this week; once at her house, once at my apartment and she looks great! It probably was the best part of my birthday. 

I am over the moon about a trip I've been planning. I asked Tiffany whose one of my assistants, to take me to Minnesota to see friends from Camp. I've outgrown Camp Courage. Two reasons: 

1. The counselors manage the campers. I have been managing my help for five years, which did not sit well with Ms. Independent last year. I am fully capable of going to the pool and back to the cabin by myself, thank you. Your assistance was needed when I had to go to class in a rainstorm. 

2. I can't wear a bikini? Are you kidding me? This body needs a bikini!  I think after a pretty extensive conversation with the lifeguard, I knew I had outgrown Courage. 

Courage is an amazing place and I still hold it to the highest regard. I am older now and have to maintain relationships from Camp. I seriously smile every time I think of Tiffany and I going to Minnesota in 25 days and 7 hours (but whose counting)? I will see the current love of my life, my adorable godson, Will. He has gotten so big! I have plans with a lot of friends and I get giddy any time I think about it. 


Have a great 4th of July!!

Love,
Hannah!

God and Gravity

I woke up at 11:15 and I have this sick feeling all over my body. My assistant was supposed to be here at 10:30. She isn't here. Tiffany, my other assistant texted her when I went to bed the previous night reminding her of when she had to come that day. Just in case, Tiffany had accidentally said 11:30, I waited until 11:35.

When the 34 turned into a 35 on my clock, I knew I had to take action. To be brutally honest, I knew this at 11:16 but I didn't want to face reality too soon. I had a plan of action. I would press my emergency button. My emergency button was going to call my family or the police. I knew Mom or Dad would know I was in trouble in an instant or the police would figure it out in five seconds. Now, pressing the emergency button is not an easy decision. It is literally saying all hell has broken loose and I need help NOW. I was in bed, comfortable, not in pain, but regardless all hell had broken loose. I press the emergency button, it doesn't cooperate. I rip it off the wall praying it wouldn't fall somewhere I couldn't reach. Thankfully, it fell right where I could handle it. I press it, it does not work. I try a few more times, it does not work. So, my only other option is to crawl to my phone.

I lay in bed picturing how this is going to go. After being in therapy all my life, I know I'm ready for this. I flip over to my stomach and manage to have my legs stiff and off the bed. I scootch until I'm kind of in the squatting position. This is the terrifying part. My knees aren't on the ground, I have to let go of the bed. I don't have balance; it was taken away from me at birth. So, my knees are two inches from the ground and I have to let go of the bed. Closing my eyes and wincing, I let go. Gravity serves me right. I comfortably kneel at my bed all limbs in a place providing balance. My left hip decides to go to the left and I don't mind the decision my body made for me. I gently go into side sitting. I practiced side sitting in therapy all my life and the bed was supporting me. I was safe and comfortable. My hands are slipping very slowly to the floor. I go with it. You have to understand that I'm shaking because I am so emotional. I am now on the floor. This is actually a blessing. I have time to really think about what is best. I have to travel about 3 feet which seemed like the length of a football field.

Now, every pediatric therapist in America would probably guess that I resorted to getting on hands and knees. I looked around and knew it was not the right decision. I saw a window sill, my night stand, and my dresser. These are all things I could have hurt my head on. Instead of crawling, I roll to the night stand. I try to reach the phone from the floor. I couldn't. It was a long shot and I knew it. I looked at the three legs supporting my night stand. If I tugged at the right one, my phone would drop to the floor. However, my clock radio could also fall...on my head. God, don't let the clock radio fall on my head. Gravity, work with me and let the phone fall. I am able to cover my vulnerable body with some pillows. I grab onto the leg of the table and very gently tip the table so the phone is on the floor and the clock radio stays on the table.

I have my phone! I don't call Mom or Dad because frankly I want to get in my chair! A lot of people have asked about that. It's simple math! Tiffany lives 10 minutes away and Mom and Dad live 40. Who do you think I am going to call? I love my parents and I will have all day to get comforted. Right now, I have to go to the bathroom, eat breakfast, not to mention, take my medications. I decided to call Tiffany.

"Help"
"What"
"Help, help, help"
"Why aren't you using your DynaVox"? You can imagine my incredible frustration at this question.
"Help, help, help"
"Hannah, I'm on my way but text me if you can"
My text said "I fell'. Now, this obviously wasn't true but it was easier than explaining everything and it got the message across that I needed help NOW.

After I knew Tiffany is coming, I started to cry. I cried because I am frustrated, angry, scared, and I cried because I was proud. My body and my brain had worked in unison as well as God and gravity.
"You poor baby" Tiffany exclaimed! "Did someone come this morning"? I looked at her as if to say "that is a stupid question". Tiffany apologized and asked if I was in pain. I was not. Tiffany, skinny as a toothpick now has the challenge of carrying me to my chair. We decided to forego putting on my shoes because I was so upset and my body was so out of control. "Hun, you have to calm down for me to carry you". She told me this was part of her Certified Nursing Assistant training. She finally got me in my chair.

Tiffany called my mom. We got her voice mail. "Jean, this is not the time" Tiffany yelled into the phone. I had to laugh. We called her work number and got to talk to her. As you can imagine, the three of us were both pretty angry.

The woman who was supposed to come didn't know she had that shift. She thought I was referring to the night shift in my text sent the previous night. She then proceeded to do some other things that my family and I got upset over. We did fire her. It really worked out because now I have a wonderful woman named Courtney in my life.  Were already good friends after two days of working together!

I have exciting news! I did get a paid internship four days after this ordeal. It's interesting to critically think about the fact that I can't get myself dressed but I can get a job. It's interesting if you really think about the paradox in that fact

I will be working for River North Business Association. It's an association for Chicago professionals and we create opportunities for members to network. I'll be managing their Facebook, Twitter, LinkedIn accounts as well as writing articles for them. I'm ready to be a trail blazer in the work force. At this time, I have to acknowledge the Americans with Disabilities Act, the Equal Employment Opportunity laws, and all the other individuals with disabilities who opened doors for people like me. I will be a trail blazer in my own way but I wouldn't be able to get a job if they hadn't been pioneers. I end my internship with Easter Seals on June 7^th. They have been nothing but supportive.

Julie? She is really struggling with her stomach. The good news is she is going to North Carolina and seeing the world's best doctors when it comes to transplants and their side effects. This will happen tomorrow. I ask for your continued prayers and positive thoughts. I pray that they can help Julie because this is awful for her.

To end on really good news, I have a roommate! I know. Hallelujah! Her name is Rita and she is a sweetheart. I thank everyone-especially my parents for searching so hard. I know many of you tried and all of you were in my corner. 

Last year at this time I was graduating. This year has been a roller coaster! I’ve been through so much with my health problems, assistant issues, the roommate drama, this journey with Julie (wouldn’t trade it for the world), and learning how to be a productive citizen of the world with a disability. It’s hard! I really wouldn’t change anything about my life because the rewards are so rich. One of the rewards is this blog. You give me so much support throughout the year. I’m absolutely humbled because you don’t have to read my stories or follow my life, but you do and that is an incredible blessing.

I love you all!

Hannah!

P.S. Next time I write, I’ll be 23! It means another year of good stories! Can’t wait.

A Wheelchair and an Interview

I put on a full suit. I wear the pearls from my nana that I received for college graduation. I save answers in my DynaVox hoping to make my life easier. My assistant, Kim and I have the address of the company. I'm ready to go on my first job interview.

 When Kim and I arrive, we wait for Miriam, my employment specialist. I'll formally explain her role later in this post. Right now, you can just think of her as my biggest cheerleader. The Human Resources manager greets us. Miriam has only told them I have difficulty talking. Surprisingly, he doesn't look all that surprised at my entourage. Miriam and I head to his office.

The first thing I notice was that he has a metal desk. I cringe only because my feet will make a racket during our conversation. “Get over it, Hannah” I think to myself! Miriam makes small talk with the manager. I am grateful for this because small talk with strangers in an incredibly stressful situation is unbelievably difficult for a person with a communication device. He directs his attention to me and asks a question that I did not have the answer to stored in my DynaVox. I think to myself, “shoot! You're good with words, Thompson, kick butt! My first answer was average. I think to myself, “you have to do better and stop kicking the desk”. By the end of the interview with the HR manager, I'm much more comfortable and I am finally in my element.
I go up to meet with the marketing manager. Her desk is wooden. So, when I kick the dang thing, it does not make as much noise. Thank God! We start talking and it's much easier than the first part of the interview. I talk about my leadership courses, my work at Easter Seals, and a few odds and ends. The interview wraps up quite nicely. I applied for the social media specialist position. This means I would manage all their social media accounts. This particular company doesn't have a social media specialist yet so the woman said I might be hearing back from them as late as June.

Now, who is Miriam? Miriam is from Jewish Vocational Services (JVS). They help people with all kinds of disabilities get hired. Miriam has put me in contact with two recruiters so far. They are head hunters. Once they meet me, they meet with companies and may put the company and I in contact. On a different note, I am starting my own business. Mike, who is also from JVS is helping me develop a business plan and build a website for my speaking career. I am so excited when I meet with them and I appreciate that they see my potential.

In other areas of my life............

Julie is doing pretty well. She was in the hospital for most of the month. I am rolling with the punches and holding her hand throughout this roller coaster. I actually haven't seen Julie since mid March. Due to all her medications, she is vomiting every day and that causes dehydration which is the main reason for the hospital visits. If I had to choose something for her to battle, it would be the dehydration because it's easily treatable if you go to the hospital and it does not affect the lungs. However, she doesn't feel like visitors because she is vomiting so much. I'll wait, I'll be patient, I’ll pray, I am on this roller coaster till we get those lungs.

On a completely different topic, Megan, an assistant who was with me for three years in college has requested I mention a contest to you. Some people with disabilities cannot afford an accessible van. This causes undue stress on the individual or family. Mobility Works, the company I use, has a contest every year. The winner of this contest wins a free accessible van. One of Megan's students is a contestant. Here is the link to vote for Megan's student: http://bit.ly/YLiBfW. It would mean a lot if you did vote.

One last thing. If you don't know already, I desperately need a roommate. Here is the deal. My roommate just has to be here from midnight to when she has to leave for work. That is it. My parents help pay her rent. I live in a beautiful condo near Elmhurst, she would get her own bedroom and bathroom. If you are interested or know a great person, e-mail me! It doesn't involve any training or medical knowledge. Readers, let's find somebody!

Happy May,
Hannah! 

David and Genevieve

I love being a big sister...I really do.

Genevieve, my little sister got confirmed this month. She and I sat next to each other as she became an adult in the Catholic Church. I saw her profile as the bishop gave a great homily. I thought about when I held her on the day she was born. If you watch our home videos, Mom asks me if Genevieve is better than an American Girl doll, my eyes said it all that day. I realized it was almost time to talk to the bishop. I tried to calm her nerves by lighthearted chatter but I was too nervous. I wanted everything to be perfect for Genevieve. The bishop came to us. I held her hand and she explained why she chose St. Mary. I didn't remember a thing afterwards because I was so nervous for her. I gave Mom the infamous thumbs up meaning we can all breathe.


How did that infant become a mature, sophisticated, multi faceted individual? I ask her for help now; she is such a great sister. Genevieve started an after school program for students with special needs. It's such a great idea and I am so very proud of her for really doing it. She didn't just talk about doing it; she DID what she wanted to. I have incredible respect for her not because she's my beautiful sister but because she saw a need and filled it.

I know David is this amazing athlete. I realized it when Dad said "I never thought my son would have the choice of being a college athlete". I may not understand the rules of baseball but I know that is HUGE. He will be making big decisions this next year. I know he will look to Mom and Dad a lot as he should but I hope he glances my way for guidance once in a while. He is such a great kid. He helped me get on roller coasters at Mall of America. He grabs me and just has fun with his big sister. I hope colleges see that side of David too. To me, that is the best part of David and Genevieve...they really don't see the Cerebral Palsy. They just see their sister (sometimes their annoying older sister)...hey, I didn't say I was the perfect older sister.

I know you're all curious about my best friend, Julie. As I am typing this, she is at her lake house. She is still on oxygen and waiting for lungs. She went in the hospital for a blood clot in her shoulder area then dehydration two weeks later. This girl can't catch a break! Actually, I've been reassured by her mother that these two hospitalizations are speed bumps. These are just battles. The war will be the transplant. As for the lungs, we just wait and wait. And wait some more.

As for me, I've been having yet more stomach pain. Yes, pain in the same place but for different reasons. I've gotten sick, went home twice, it's been such a mess! We're very close to the answer and if it is what we think it is, it's pretty easy to treat. If I have learned anything from Julie, it’s to have a positive attitude. It's hard because I'm so uncomfortable some days and I am frustrated but we know it is not anything serious which is so important and a blessing.

It'll be Genevieve's 8th grade graduation in two months. For David, its baseball season...I believe it is his personal favorite. His favorite season may lead him to a college. For today, it's Easter and I got to see them open their Easter eggs just like their first Easters. That is enough joy for me.

Happy Easter,
Hannah!